The Leukemia & Lymphoma Society - Fighting Blood Cancers
17 Replies Latest reply: May 9, 2012 9:33 AM by S.Pinchak RSS

ALL survivors, please post here about your success stories :)

ThePureOptimist Registered Users
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I am also a survivor of ALL, diagnosed at 4 years old, am now turning 21.  I would love to hear about others success stories, and it's always heartwarming to know that there is hope for all those still going through treatment. Let's help them keep their chins up and stay positive!

  • Re: ALL survivors, please post here about your success stories :)
    FRAN641 Registered Users
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    Ryan WOW 17 years!  I was diagnosed with fNHL 9/10 and after 4 R-CVP treatments was just told about 2 weeks ago that I am in remission.  So I guess until told other wise I am a survivor.

     

    I am still adjusting to this new normal of no treatments and all the running around to docs.   These boards have been a powerful tool in my survivor kit.  I hope many people find their way here to get all the support and caring I have experienced.  It is people like you that give me hope that life goes on and can be a bright future even at my age, 62..........

    Take care,  fran

  • Re: ALL survivors, please post here about your success stories :)
    Jarhead Registered Users
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    I was diagnoses ALL PH+ May 09', currently in maintanance phase...in complete molecular and complete cytogenetic remission...about to hit the 2 year anniversary

  • Re: ALL survivors, please post here about your success stories :)
    SweetPotato Registered Users
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    My daughter, Isabel, was dignosed with A.L.L at age 5.  She is now 9 years old and very healthy and happy.  Right now she is packing for a sleep over and is excited about going away to Camp Okizu this summer (her 2nd time).  You'd never be able to pick her out as the kid who fought cancer. She's glowing with health and happiness. Her little brother, who is now 7, wants to become an oncologist!  Isabel wants to be an artist and social worker.

    • Re: ALL survivors, please post here about your success stories :)
      MomGoneCrazy Registered Users
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      Congratulations, Ryan.  I read your note & it brings tears to my eyes.  I am so happy for you and to hear about your story.  My little 3 year old boy was diagnosed with precursor B cell ALL (triple trisomies) in October of 2010.  He just finished the DI phase of chemo and is now on his 2nd Interim Maintenance Phase.  The oncologist has told us to be hopeful because of Cory's cell type and chromosome type, however, there is so much uncertainty and no guarantees.  I have only ever known one other person in my life to have had leukemia; it was a girl in high school, and she passed away before our 5 year reunion.  So when I learned of my son's diagnosis, Erin is all that I could think about.  Thank you for sharing your story.

  • Re: ALL survivors, please post here about your success stories :)
    Shannon64 Registered Users
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    I was originally diagnosed with follicular, cutaneous, NHL in '02.  It was a lump on my scalp that only required radiation.  After 5 years I thought I was home-free...I was wrong.  In the spring of '09 my small intestines were filled with the disease.  I had 6 treatments of R-CHOP beginning that fall.  I was declared cancer free in the spring of '10, but after consulting with my doctor and a BMT specialist, it was decided that I should have a BMT in the summer of '10.  This was decided because I'd had a recurrence, and the disease tends to keep returning.  Even though it was an autogolous transplant, I had host v graft disease, but since that has been treated, I think I feel better every day.  I will celebrate my 1 yr birthday June 23, and plan on celebrating many, many more.  So even though I had a set-back, I consider myself a success story.  

  • Re: ALL survivors, please post here about your success stories :)
    Toddmtedder Registered Users
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    I just joined here hoping that I can help someone fighting for their life right now.  I'm 38 years old.  I was diagnosed with ALL when I was 6 years old.  I fought through a month of raditation and 3 years of chemo.  I'm not going to lie, it was all the work of the good Lord himself.  He gave me the strength to survive and gave the doctors and nurses the skills to help.  I've witnessed a lot things, some bad and some good, and countless blessings as a result of my fight with ALL.

     

    It wasn't easy.  There were times when I just wanted to lay down and die.  That's where my parents, grandparents, family, friends and loved ones  stepped in and helped me through it.  I've told many people many times unless you have went through it, you might not understand.  I've seen my mom keep trudging through all the appointments and routines to make sure I would live.  She sacrificed so much.  So much, that I didn't understand until I had children of my own.  I was told after the chemo and radiation that it would be almost impossible for me to be able to conceive.  Again, God showed them his power.  I have a daughter that is 12 and a son that is 7.  I was also fortunate enough to have God lead my wife into my life.  She's a wonderful woman, a loving wife and the best mother I know.  I pray daily that we never have to face what my parents did.

     

    I would love to hear other survivor stories.  They are so uplifting.  At the time I was diagnosed, a lot of the tools and resources available today weren't around.  Our hospital, Arkansas Children's Hospital, was a huge support.  I met a lot of friends during those years at the clinic.  My parents also got a chance to meet parents going through the same things that they were facing.  Some of the friends I met weren't as fotunate as myself.  Me and a few others were long time survivors, but we were the exception, not the norm.

    • Re: ALL survivors, please post here about your success stories :)
      MomGoneCrazy Registered Users
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      Toddmtedder, thank you for sharing your survival story.  You'll never know how powerful it is and how much I admire what you and your family has gone through.  I could only hope and pray that my son will have the same outcome that you have had.  He was diagnosed with ALL 3 months after his 3rd birthday, and is a little over 8 months into his treatment.

  • Re: ALL survivors, please post here about your success stories :)
    irishbechmom Registered Users
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    I was wondering if anyone is an adult survior of All - Someone who was an adult when diagnosed with All.  It would be nice to here from you so the rest of us get a wooo it does happen - esp when feeling blue.

    Thanks

    • Re: ALL survivors, please post here about your success stories :)
      Sue74 Registered Users
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      My husband was diagnosed in 2007 with ALL PH+ and told he had to have a BMT.  His siblings were not a match, so he decided against a transplant & elected to take Gleevec daily & have 2 years of maintenance chemo.  It has been 4 1/2 years & he his tests show complete molecular remission.  All bone marrow tests, including PCR were negative.  God is good & there are choices out there.  

    • Re: ALL survivors, please post here about your success stories :)
      Dela, Adult "ALL" Survivor Registered Users
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      Hi, everyone.  I am an "ALL" precurser B, survivor.  I was diagnosed 3/3/09, and 51 years old, after many tests, that inclued PET scans, MRI's, blood tests, biopsies of both lymph node and bone marrow.  I began induction chemo the next day and was told that without doing anything, I only had two - six weeks to live.  e

       

      The regimen I was put on was HYPER-CVAD and was able to handle eight cycles.  Then went on the maintenance regimen, POMP(?) for two years.  It included 6MP tablets daily, methotrexate weekly, prednisone an vinacristine every four weeks.  After a year into maintenance, I had a strong toxicity to the vinacristine and reluctantly had to discontinue it.  I would ask my doctor is there was any way I could take it again, but the side effects were too dangerous.

       

      I went into remission quickly and didn't have to do the bone marrow transplant. 

       

      I have been off all chemo an steroid meds for several months.  There are several painful side effects an we're unsure if they will go away, or stay with me.  The thing most difficult side effect is the pain.  It's everywhere and so far I haven't found anything to stop it.  I would love to hear from you about this stuff.

       

      I can discuss my journey in more detail, if someone is interested.  Please share you stories with me, also.

       

      Dela

      • Re: ALL survivors, please post here about your success stories :)
        mwpdawn Registered Users
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        Hi, I also was dx with pre b ALL & started induction May 10, 2011. I am now 5 months into maint & can not have the vancristine either. You are having pain but did not say what kind.  I have joint pain in my shoulders, hands, hips, knes, & the edges of my feet.  I take 6mp, methotrexate, dexamethazone, and preventative drugs for viral and fungal infections ect, i also get spinal methotrexate every 3 months as a precaution, it was never in my spinal fluid but this is to make sure it does not go there to hide.  I will have a birthday in July and i will b 39.  I have not been hospitalized since induction and i want to keep it that way.  I have not had a transplant and i am confident the chemo is going to b enough for me!  I have been trying to slowly change me diet to eat more fresh fruits and veggies, i get massages and healing touch treatments and i am trying to figure out an exercise plan.  The Dr wants to try celebrex for my joints but more pills is not my answer, i dont need side effects from that drug to deal with too. Most days i feel good and sometimes i feel great. Still living one day at a time and thanking god daily for giving me this challange and not my children. 

        Staying strong,

        Dawn

  • Re: ALL survivors, please post here about your success stories :)
    RichardG Registered Users
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    I'm coming up on 12 glorious years following a SCT for Ph+ ALL in early 2000 at age 42 . Maybe it sounds kind of boring, but life is pretty much wonderful these days. I enjoy running (4 marathons and a dozen halfs since the transplant), running around with my 5-year-old daughter (yes, adopted) and 13-year-old son, playing racquetball, and being a Boy Scout leader. And helping out with Team in Training every now and then.

     

    Richard

  • Re: ALL survivors, please post here about your success stories :)
    momofkayla Registered Users
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    Hi all.  My daughter Kayla had just turned one when she was diagnosed with high risk ALL  (MLL +).     I used to be a frequent visitor to these boards when she was on therapy.  I have to tell you that it really gave me the strength I needed to get through some very tough days.  Kayla just hit her 5 year mark off of therapy a few weeks ago.  She is 8 years old now and in 3rd grade.  As another mother stated, you could never pick her out as the cancer kid. She loves to play, and sing, and read.  She just went on her first overnight camping trip with her girl scout troop this past weekend.  She also is competing in gymnastics as a level 4 gymnast this year.  She just loves it.  I don't think the worry ever goes away, and I know how lucky we are to have her with us. 

     

    Best wishes to all of you.

     

    Sophy

  • Re: ALL survivors, please post here about your success stories :)
    mm91174 Registered Users
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    I AM LOOKING FOR ANYONE WHO WAS TREATED FOR A.L.L FROM THE MID 70,S THROUGH THE LATE 80,S. WOULD LIKE TO DISCUSS ANY LATE EFFECTS. I AM NOW 37 YEARS OLD, WAS DIAGNOSED IN 76 AND WENT THROUGH APP. 12 YEARS OF CHEMO/RAD "3 RELAPSES" ENDING IN 1988. I WOULD JUST LIKE TO COMPARE NOTES AND SEE IF ANYONE WITH A SIMILAR HISTORY IS HAVING SIMILAR PROBLEMS. PLEASE CONTACT ME AT MM91174@YAHOO.COM or HERE Thanks

  • Re: ALL survivors, please post here about your success stories :)
    Hope_Floats Registered Users
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    My son was diagnosed in 2005 with T cell ALL/LBL, he had a sct at the end of 2006 and is doing well today.  He has some memory issues from the radiation, as he had relapsed in the CNS and required extra cranial radiation with his transplant.  He will celebrate his 5 years post translplant this month.  With each passing year we count our blessings....By the grace of God is why he is here today.

  • Re: ALL survivors, please post here about your success stories :)
    JReedA3 Registered Users
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    I was diagnosed in 1983 with AML I was 3 years old I am now 31 so it will be 29 years in June

  • Re: ALL survivors, please post here about your success stories :)
    S.Pinchak Registered Users
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    Was diagnosed in July 2007 with ALL at the age of 52.  Went through 4 cycles of chemo inpatient + several outpatient treatments.  Was in remission by Nov. 2007.  Had a stem cell transplant in Dec. 2008.  Was doing well till Christmas eve when I developed a high fever.  Turned out to be a bacterial infection.  Was treated and released about 2 weeks later and sent home with home IV antibiotics every 6 hours for 30 days.  Thought I was doing well, walking a few times a day and staying as active as possible.  A few weeks later wound up back in the hosp. due to shortness of breath and coughing up blood.  Turned out to be endocarditic which damaged my mitro valve.  Was again released with home IV antibiotics.  In Feb. 2008 back again for emergency heart surgery to replace my mitro valve.  Thank God by then after changing infectious disease doctors the infection was gone so there was no risk of the new valve getting damaged. 

    A few months after the heart surgery I was doing cardio exercises and lifting weights as instructed by the cardiologist.  Am still active and keeping up with my exercise program.  Had chronic GVHD twice and put on high dosed of prednisone.  About a year later I found I had avascular narcrosis in both hips from the prednisone cutting off the blood supply resulting in the hip bone dying off.  Considered hip replacement but the transplant doctor and cardioligist advised to put it off as long as possible and streghthen the leg muscles.  Been much better since then.  Have neuropathy in both feet and arms.  Had shingles in my right arm from the shoulder to the hand in 2010.  Have some disc problem in my neck and lower back.  Despite all of that I'm still able to enjoy life and work around the limitations.  Believe it or not I feel the best when I'm active.  Have a few other side effects but nothing too bothersome.  Blood pressure, weight, sugar, heart rate and blood work all fine.   

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